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My tiny guy

Discussion in 'Parents of Children with Type 2' started by sarahsue42, Nov 21, 2012.

  1. sarahsue42

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    We're not yet to diabetes, but we're on the edge. My almost 5 yr old is weighing in at a whopping 35lbs. On his first birthday he only weighed 16lbs and he was actively losing weight at that point. Test after test showed nothing wrong, but clearly something always has been "wrong". For most of his life he's been hypoglycemic, usually with fasting blood sugars in the 60's. He'd wake up in the morning and be shaking so badly from low blood sugar that he couldn't hold a spoon. It's horrible to watch your 2 yr old going through that.

    We have controlled his diet to the point where his ped is thrilled and his nutritionist heaps praises on us as doing a great job to control his blood sugar, and we thought we'd be in the clear. We just wanted to keep him healthy and hopefully stave off diabetes. His older brother is responding beautifully to diet modifications (although he was never as sick as my youngest).

    Well yesterday my youngest's blood sugar at 1hr post eating was 198 and he'd had eggs for breakfast. Even 6 months ago it was in the 120's. We were sent immediately for an A1C test, which came back at 5.6 (5.7 would put him at pre-diabetic I think).

    They're telling me he's on the downward slope to Type 2. I'm at a loss. Before we had an action plan that was supposed to work as long as we were diligent enough. We were blessed to know early on that our kids were at risk so we could take the steps to prevent. I just don't even know what to do with an underweight child who is facing Type 2 diabetes. People (who may or may not know what they're talking about) are saying "cut all carbs" but then I run the risk of him losing more weight. We've talked about it with the ped and nutritionist but they have the same concerns, that he stops gaining weight or starts to lose weight again.

    We'll meet with his doctors again next week. I'm just... I don't know. I had to get it out.
     
  2. emm142

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    What on earth would make them think that your underweight 5 year old is developing type 2 diabetes? As far as I know, that's pretty much unheard of.

    Have they tested him for antibodies (type 1) or genetic differences (monogenic diabetes)?
     
  3. sarahspins

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    My 5 1/2 year old is 39lbs and only about 17lbs at a year... he's perfectly healthy, just petite.

    Given your child's age and size my concern with the higher post parandial numbers would be early signs of type 1, not type 2. I would push for antibody testing which could confirm a T1 diagnosis. If your doctor isn't willing to do this or keeps suggesting T2, I would seek the advice of another doctor.

    Don't cut out any carbs or calories - kids need carbs and calories to grow.
     
  4. ChristineJ

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    Welcome to the forum! I agree with the previous posters. Type 2 sounds much less likely than either early Type 1 or Monogenic Diabetes. What sort of testing have they done regarding the hypoglycemia? What sort of testing, if any, are they planning now?

    Christine
     
  5. deafmack

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    Even people with type 2 can be petite, but at the same time, I think that only looking at one type of diabetes is a mistake. There are different forms of diabetes such as type 1 and monogenic. I think you may be just catching it early. The other thing that makes me think the reason that the doctors are only looking at type 2 is because of the hypoglycemic episodes but they should not just look at that as a reason to think he has type 2 and refuse to consider other forms of diabetes.
     
  6. MomofSweetOne

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    My T1 ran in the hypoglycemic range for three + years prior to her T1 diagnosis. Her fasting BG 9 months before diagnosis was a 55. When I said I wanted her tested for diabetes, our doctor initialy disagreed with me because of the hypoglycemia. It turns out that her pancreas had been telling us it was stressed and overfunctioning to compensate. I would find a doctor ASAP who is familiar with T1. It can turn dangerous, even deadly, very quickly. You don't want to mess around with it.
     
  7. sarahsue42

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    Thank you for all the replies. It's been a weird few weeks. We meet with his ped for his 5 year check up in just over a week and she'll likely do the genetic testing and refer us to a specialist. We don't have an action plan yet, but knowing her as I do I am sure that's what she's going to say.

    He had fasting blood sugars done to show the hypoglycemia, but it was really obvious even without those. He'd wake up in the morning and his hands would be shaking so badly he could barely hold a spoon. If he ate foods with too many carbs/sugars he'd spike and drop. That was fun *sigh*

    The doctor running his numbers is fully versed in both types and extremely experienced with kids who have bodies that are doing funky, out of the box things, so while I won't say it isn't T1 (nor would she for sure) I do trust her judgement. I think it has mostly to do with how his body has functioned over the last few years that she's been seeing him. She's not an endo, though. We'll explore both types. My ped is excellent. My experience with endos, not so much. We've seen one before and gone through a lot of testing, but they were useless. However, he was 12/14 months at the time. Definitely want to see someone else, cause that man was stupid.

    Type 2 runs rampant in the family, no type 1.

    He's always been somewhat off. He could pound down a massive grilled steak burrito (which my husband would make for himself) at a year, but was actively losing weight. We tried pediasure (at the endo's insistence, useless man) and it didn't do jack except make him jittery. We put him on digestive enzymes and he started eating less and gaining.

    Definitely not cutting out more carbs (other than the wheat). He's eating nuts like they're going out of style and he's started to crave them. At least I don't have to fight him to eat them.

    Anyway, I'll keep everyone posted after we meet with the ped. Thank you for the words of wisdom. This is such a weird place to be.
     
  8. nanhsot

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    It's fairly simple to know it's T1 by the presence of antibodies, there are particular ones that will pinpoint it, I'd ask for those specific tests to be run. You can at least rule OUT T1 but if he has those antibodies you do need to know so appropriate treatment can begin.

    The highs and lows do seem rather weird, and I know there are metabolic conditions unrelated to either type of diabetes that can cause some of that, but it's not something I know enough about to really comment on. Honestly it does not sound at all like Type 2 though.

    Good luck with all your testing, hope you find some clear answers and directions very soon. I always feel odd saying "welcome", but...glad you found us!
     
  9. MomofSweetOne

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    There are several parents on here, though, whose kids have been diagnosed without antibodies. One of the Wills, MommaKat,...There doesn't always have to be antiobodies for a T1 diagnosis which just makes diagnosis all the more confusing. My daughter was diagnosed with 2 antibodies, not 4, but never went off insulin during her honeymoon. The lowest she got was 3.5 TDD (all basal). I've noticed other kids have all four antibodies at diagnosis. We were told that all betas would be dead within 2 months, but after 18 months, our CDE was saying she still felt my daughter had them. Now I've read Richard's posts about the older T1s that still have some after 50 years. I really don't think there is a single trigger for T1, nor an absolute diagnosis criteria, other than if the child needs insulin, they need insulin. And then there are individuals who have antibodies but haven't developed diabetes.
     
  10. nanhsot

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    As I was writing I actually thought of that, and that definitely confuses things. BUT, if there are antibodies wouldn't that be conclusive for T1?? So absence of antibodies means you still really don't know, but presence gives you more insight and specific treatment.

    I would just hate for a child to be delayed insulin and put on metformin or whatever, if they truly were T1. To me the sooner the honeymoon and the slowing of destruction the better for the long term health of the pancreatic cells. I have no scientific basis for that really, just some things I've read here and there, if anyone has more science I'd be interested though.
     
  11. ChristineJ

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    Not to confuse things even further, but it's possible to have antibodies and yet have another type of diabetes besides T1. My son was positive for lower levels (but above the normal range) of two of the four T1 antibodies, yet genetic testing showed that he has MODY. I've seen at least one case in the literature of another child that had pretty significant levels of T1 antibodies, yet she had MODY also. So maybe if antibody levels are really high, that would be more indicative. If lower to mid-range levels, not quite as much?:confused:

    Christine
     
  12. sarahsue42

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    I emailed his ped and she said she's email me the lab slip tomorrow to get the antibody testing done, so we can have that before the appointment next week.

    The whole thing is a little (a lot!) confusing. I appreciate your insights as we try to navigate this. A blood test is easy (and the kid doesn't mind them much) so better to get it, see what it says. Although unlikely (because nothing in my life is clear cut) maybe it will be a clear answer.
     
  13. Cookie Monster

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    Like others have said it doesn't sound like Type 2.

    From your comments I read that your son is low weight, has frequent hypoglycaemia and an HbA1c that is pretty good. You also mention an older brother responding to diet, so I assume he had similar symptoms.

    Others have mentioned monogenic forms and it may well be that your son(s) fall into one of those types, or it could be MomOfSweetOnes suggestion that a stressed out pancreas is telling you that Type 1 might be on the way. Another possibility might be that it is a mild form of hyperinsulinism. Severe forms are apparent pretty much straight from birth but milder cases may not present until older childhood or even adulthood. There is usually a single genetic cause that might explain both sons being affected and, even within families, the symptoms can be very varied.

    Please note I'm not a doctor, just some crank on the internet with a (mildly obsessive?) interest in wierd diabetes so don't jump to any conclusions based on what I've said but it might be something to put past your doctors when you meet.

    I hope you get your answer soon. Good luck.
     
  14. sarahsue42

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    We got his blood draw today and he did great for that (no fighting or tears).

    Yes, my older son and husband both suffer from hypoglycemia. My husband's is well controlled with diet, my older son is better than my youngest, but not as good as my husband. All 3 of them are skinny (my 6' tall husband is 135lbs) but he had great grandparents lose limbs to diabetes (T2), and grandparents who struggled with T2. My grandfather also had T2 but he just diet at the age of 96 so for the most part he had it under control. My dad is pre-diabetic for T2. So it's running all over the family, but it's definitely lifestyle in those cases.

    My next question is if something odd is going on (ie not a straight forward yes or no), am I going to be struggling to find an endo that will be able to give me answers? We're 20 mins from Johns Hopkins, so we can get him seen there if need be, but I really hate how we've been jerked around so much looking for answers for Luke. I don't want to be dragging him to 40 different doctors trying to get answers if I can help it. :(
     
    Last edited: Dec 11, 2012
  15. deafmack

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    One thing that a noted Diabetes Expert said at a CWD mini conference here in Seattle last year is that they can no longer tell if a person is type 2 or type 1 by weight alone. That testing must be done. I know on another forum that this member has family whose members are all type 2 and are very thin,
    Also there is a form of type 2 called "Flatbush Diabetes" that has antibodies.
    so it is important to have the testing done to find out what type of diabetes one is looking at. And there is a type one diabetes that has no antibodies
    Type 1b. So testing is important to know which type. I also feel that a person can have more than one type such as type one and mody at the same time, especially since there are types of diabetes that are completely different from one another.
     
  16. sarahsue42

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    His antibody test was negative completely and his liver is looking good. All good signs.

    His ped reminded me that most people are coming in for dx'ing while in crisis, and we've been really on top of his blood sugar/diet for his whole life, and it's possible we're just in the very beginning stages that most people never see because they didn't know to be looking. Ped asked what I wanted to do.

    And I don't know. I don't know what I want to do now. I don't want to drag him and my 8 month pregnant self around to a bunch of specialists for a bunch of tests if we're too early for them to do anything anyway and maybe even too early for a dx. We're already aware, and doing all we can short of meds to keep him healthy.

    I don't know. Your thoughts would be excellent.
     
  17. missmakaliasmomma

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    My daughter will be 5 soon and weighs 34 lbs. She's tiny too. She has t1d. I've never heard of a 5 yr old being at risk for t2d. I agree with the other posters that it could be type 1 or more likely, some other autoimmune issue
     
  18. missmakaliasmomma

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    I forgot to mention that celiacs can bring the bs down because the body doesn't absorb the nutrients. It could also be why he's tiny, just a thought. Have you gotten him tested for celiacs?
     
  19. sarahsue42

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    no celiacs and no antibodies for t1 so we'll still have to wait and see.
     
  20. Afranzen

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    My almost 6yr old daughter is 32lbs, she has always been small. She was diagnosed in march with type 1 diabetes. However the only way they knew she had it was the antibody tests. 2 test came back positive, 1 still showed she didn't have it. Her A1C was 5.2 on tuesday, down from 5.3 at her last visit. She receives a very small amount of insulin at lunch and dinner and nothing at breakfast. There are some days she gets only half a unit a day. I would suggest seeing a pediatric endocrinologist they will be able to more accurately diagnose your sons condition.
    Good Luck!
     

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